We Are Not Alone

Autism is a neurological condition characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences.

We aren’t doing this alone.

From the beginning we had people watching out for her, making subtle but sweet comments about our little Lucy.

“Oh! I can’t believe she’s not learned how to wave yet.”

“She really likes to bounce.  She’s very fidgety.”

“I never noticed how often she repeats your words.”

It was just a couple things at first: the bouncing- oh! the bouncing- her obsession with letters, her spacey stares.  Then came the echolalia.  Her totally awesome and odd ability to do shape sorters faster than most adults.

But we’d never done this parenting thing before… we didn’t think any more than our child was bright, funny and a little quirky.

When the evaluations and assessments began, things became a little more clear.  She never babbled as an infant.  She never pointed.  She never waved.  She could say all of her letters frontwards and backwards and sideways, but couldn’t say many words and phrases.  She was memorizing movies before she was two.

Then came her first teachers; Jen & Ginger, eager to teach Lucy some beautiful new skills.  Then came Mrs. Steele & Miss Laura at her first community preschool.  When it became too overwhelming for her, Miss Becky swooped in, stuck her in a classroom with a handful of other special needs kids, the most amazing paras and after a year- voila!- she headed to community preschool again.  Lucy spent almost two years with Miss Laura and Mrs. H, learning incredible new skills like writing and cutting, but more importantly- learning how to be in a group, participating, playing with friends, asking for help, advocating for herself.

I was terrified for Kindergarten.  But once again, Lucy is pulling in rock star status- with the help of Mrs. Davies and Mrs. Stenzel, learning and growing remarkably well (and fast)!

But see? I haven’t even mentioned the amount of people who continue to love her EVERYDAY for just being Lucy.  Her paras, her friends, her church, her community- WE ARE NOT DOING THIS ALONE.  And we are so grateful and so blessed to live among people who continue to support her and our family.

And I’ve tried to be honest about it all, about how funny it is and how terrible it can be.  The ups and downs feel like mountains some days and others we wade in calm water.  She can’t go into Aldi because the “lights are too loud.”  Getting a haircut is physically painful for her.  She lines up her toys several times a day and will be completely frazzled until each item goes back in its spot.  She can get physically aggressive over absolutely nothing.  She could lay awake for hours in bed if we didn’t give her a melatonin.  Going somewhere out of routine not only takes serious bribing, but coaching, repeating and going through each step of the process.  Over and over and over.  And she’s still pissed about it.

It was always my hope that by being so vocal about Lucy and about our family that it would allow people to better understand the ins and outs, the good and bad of living with a child with autism.  It was always my hope that by giving you a little window into our life it could change how you see others- how you teach your children about differences… how you react to a little boy in a sensory overloaded store while his mom is trying desperately to get him out… how you interact with adults who don’t look you in the eye or who may be a bit “off”.

Autism is confusing.  It’s overwhelming, frustrating, and different.  But it is also brave and bright.  It’s colorful, hilarious.  It’s up and down and all over.  It is teaching and learning.  It is a journey.

It is not a puzzle piece waiting to fit in a puzzle.  It is its own puzzle.

Please keep talking about it.  Tell your friends, tell your children.  There are wonderful resources out there to educate yourselves and your loved ones.  Open your hearts to people who are different than you.  Look for their strengths rather than focus on their weaknesses.

It may be World Autism Day, but every day is Autism Day in our house!
We stim. We laugh. We line things up. We push and encourage. We try new things. We repeat. We learn. We flap. We have routines. We conquer. We teach. We hope. We inspire. We support. We accept differences. We advocate. AND WE LOVE.